“But he doesn’t look special needs!”
“Well, my son does that, too.”
“Everyone has trouble with something, you know?”
Like sands through the hourglass, these are the words of our lives.
If you have a child with a special need, you probably know those words, too. You probably hear them every time you explain why little Johnny won’t go in the sandbox. Well-meaning friends, family members, even doctors say these words to you, not out of malice, but usually in an attempt to help.
You hear them because your child’s disability is invisible. Maybe not all of it – maybe only sometimes – but it’s there, invisible to the naked eye.
When I tell people my son has special needs, they look surprised. I think they must be looking for a tell-tale sign, though I don’t know what that would be. Maybe if he had tentacles? That would actually be pretty cool. But I digress.
The thing about a disability that isn’t super obvious is that parents often find themselves having to defend the reality of their situation. You don’t want to overstate things and make your situation sound dire, but you also don’t want to pretend the need doesn’t exist. You feel guilty for using phrases like “special needs” or “disability” when your child is thriving and running around at school. You feel guilty for not using those phrases when you see your child struggling and hiding at school. It’s a lot of tricky waters to navigate.
A common response, at least in my circles, is for people to sort of write off the special need. My son has trouble with noises, but “Aren’t all kids sensitive to loud noises?” My son struggles with balance and strength, but then someone reminds me that “no one ever goes to college without learning [insert skill].” My son gets overstimulated quickly and easily, and misbehaves as a result. But “All three-year-olds misbehave – it’s just a phase,” I hear.
The impression I get is that this kind of response comes from one of two places: 1) The person feels the need to reassure me; they want me to know that my kid will be okay and his needs are just as typical as the average child’s. 2) The person feels the need to make it into a competition – a Pain Olympics, if you will, that consists of comparing children to determine who has it worse. (That type of response baffles me more than the first one, but I’ll add it to the list of things I’ll never understand, like calculus and people who exercise first thing in the morning.) The over-arching theme seems to be that Joshua’s special needs are actually manifestations of the needs of every typical child, using the evidence that he looks, speaks, and acts like a typical child.
But I have a secret for you that will blow your mind. Are you ready? Take a swig of your Coke, splash some cold water on your face, and really prepare yourself.
You can have a special need and also have a lot of typical traits.
That’s right. It’s true. Having special needs doesn’t define your entire personality, anymore than being short has defined my personality (but the struggle is real). You can struggle with loud noises and still enjoy a movie. You can despise the feeling of sand on your fingertips and still brave a beach trip. You can throw a tantrum like every other toddler and still need extra help to calm down. Special needs, like all needs, are fluid. They change. You might even say they don’t make sense, because they are unique…special.
A special need is exactly what it sounds like: A unique trait that needs extra care. It might not look the same every day. It might not even be the same every day. It might come in a limp, or a sensory disorder; a feeding tube, or a special vest; a hearing impairment, or a compulsion to count trains. You might recognize it; you might not. That’s what makes it so special.
Please know that I don’t harbor any ill will towards anyone over their response to Josh’s needs. I really do understand that you don’t understand. And I don’t expect you to. I have zero clue on what it’s like to struggle with many issues that others deal with. And I can’t always relate when you tell me what you’re struggling with.
The good news is that you don’t have to relate. You don’t have to get it. You don’t have to experience it. You don’t have to give me advice. You don’t have to compare our children. You just have to trust me.
Trust me when I tell you that my son is not just being a grumpy toddler; that he is actually struggling with sensory overload and needs some time alone before he melts down. Trust me when I tell you that even though he put that bite in his mouth, his eating issues are far from over. Trust me when I tell you that I am exhausted from having to help him with every little thing that is often taken for granted. Trust me when I tell you that my son really does need help with these steps, and no amount of “tough love” will cure his low tone. Trust me when I tell you that while yesterday he was fine, today he cannot stand the slightest touch on his skin. Trust me when I say that I am not trying to compete with you or your child’s needs, or pretend like things are worse than they are. Trust me when I tell you that my son is like your son in so many wonderful ways, and different in so many others. Trust me when I tell you that while I am far from a perfect parent, I know my child and I know his needs. Trust me when I tell you that the skill he just accomplished really is that big of a deal, worthy of cake and ice cream and a thousand parties in celebration. Trust me, and smile at me when I drag my screaming child from the store, and forgive me when I decline playdates because we’re having a bad day, and pray for me when I tell you I need it, and then let it go.
You don’t have to understand. You don’t have to relate. You just have to believe me. That’s how you see an invisible need.